YouTube star who suffered from real-life Benjamin Button disease dies at the age of 15 after inspiring millions with her videos: Family pays tribute to teen and says she ‘is no longer in pain’
- Adalia Rose from Texas was diagnosed with Hutchinson-Gilford progeria, or Benjamin Button disease, when she was three months old
- The condition, which affects fewer than 500 children worldwide, is categorized by extreme accelerated aging and has an average life expectancy of 13 years old
- Earlier today, her family told followers that she died yesterday as a result of her condition
- As Adalia grew up, she found fame on social media, racking up 2.91 million subscribers on YouTube and 379,000 Instagram followers
- Videos of her dancing went viral, and two years ago, Jennifer Lopez’s designer Michael Costello gifted her dresses for her 13th birthday
A teenage girl who suffered from real-life Benjamin Button disease and amassed a millions-strong YouTube following has died at the age of 15.
Adalia Rose, from Texas, was diagnosed with Hutchinson-Gilford progeria, a genetic condition also known as Benjamin Button disease, when she was three months old.
The condition, which affects fewer than 500 children worldwide, is categorized by extreme accelerated aging and has an average life expectancy of 13 years old.
As she grew up, she found fame on social media, racking up 2.91 million subscribers on YouTube and 379,000 Instagram followers.
Earlier today, her family told followers that she died yesterday as a result of her condition.
A 15-year-old girl who suffered from real-life Benjamin Button disease and amassed a millions-strong YouTube following had died at the age of 15
Adalia Rose from Texas was diagnosed with Hutchinson-Gilford progeria, a genetic condition also known as Benjamin Button disease, when she was just three months old
‘She touched MILLIONS of people and left the biggest imprint in everyone that knew her. She is no longer in pain and is now dancing away to all the music she loves,’ said her family
‘January 12, 2022 at 7pm Adalia Rose Williams was set free from this world. She came into it quietly and left quietly, but her life was far from it,’ her family wrote on her Instagram page.
‘She touched MILLIONS of people and left the biggest imprint in everyone that knew her. She is no longer in pain and is now dancing away to all the music she loves.
‘I really wish this wasn’t our reality but unfortunately it is. We want to say thank you to everyone that loved and supported her,’ they went on.
‘Thank you to all her doctors and nurses that worked for YEARS to keep her healthy. The family would now like to mourn this huge loss in private.
Progeria is characterized by the appearance of accelerated aging in children, according to the Progeria Research Foundation.
Symptoms include a lack of growth, loss of body fat and hair, stiff joints, and hip dislocation.
The genetic mutation occurs randomly and isn’t inherited.
Most kids with progeria look healthy when they’re born, but they start to show signs of the disease during their first year, according to WebMd. Babies with progeria do not grow or gain weight normally.
Researchers say progeria is caused by a mutation in a gene called LMNA which produces the Lamin A protein, used to hold the nucleus of a cell together.
There is no cure for progeria, but medications may alleviate symptoms or delay progression.
Adalia — or someone posting on her behalf — had just updated hours earlier, sharing an Instagram story that showed a video of a plant.
‘No… just no…. why is my family like this,’ read the caption.
Adalia’s mother, Natalia Pallante, told the New Zealand Herald in 2018 that doctors realized something was wrong within a few months of her birth.
‘When Adalia was born, I think it was she was like a month old and they weren’t happy with her growth,’ she said.
‘That was one of the symptoms that first popped up and then it was also that the skin on her tummy was really tight and just different looking.’
At three months, she received her diagnosis, and soon started losing her hair. Her veins also became visible, and her skin thinned out.
‘I was a single mom at the time, so when I got the diagnosis I was alone. It was just her and I and I honestly felt lost,’ Natalia said.
She eventually met Ryan, and Adalia got several siblings.
Ryan said: ‘We don’t even really say the word “progeria” very often, we just treat her like a normal 11-year-old and try to give her the best life.’
Adalia has had struggles, and her mom said the late teen would sometimes wish she ‘looked like everybody else’ and ‘could do what everybody else can do.’
‘But then she’ll be like ‘Who needs hair anyways, I have a bunch of wigs, I can have different hair everyday,’ she said.
Natalia described Adalia as ‘rambunctious’ and said she loved watching her grow.
The condition, which affects fewer than 500 children worldwide, is categorized by extreme accelerated aging and has an average life expectancy of 13 years old
Her dad (not pictured) said: ‘We don’t even really say the word “progeria” very often, we just treat her like a normal 11-year-old and try to give her the best life’
Natalia (not pictured) described Adalia as ‘rambunctious’ and said she loved watching her grow
‘Adalia has changed my life completely, it’s not like I was hateful but I wasn’t nice to myself. I wasn’t thankful. I didn’t realize what life was until she was born,’ she said.
Adalia’s success on YouTube has had its perks. Videos of her dancing to PSY’s Gangnam Style and Vanilla Icewere an instant hit when they went viral in 2015.
In December of 2019, Jennifer Lopez’s designer Michael Costello gifted the YouTube star two dream dresses for her 13th birthday.
One of the gowns was a Princess Jasmine costume from the film Aladdin, while another was a one-shoulder fuchsia number that looked like something JLO would wear on the red carpet.
The stylist presented the hand-made dresses to the teen at her home in Austin, Texas.
Adalia has had struggles, and her mom said the late teen would sometimes wish she ‘looked like everybody else’ and ‘could do what everybody else can do’
‘Adalia has changed my life completely, it’s not like I was hateful but I wasn’t nice to myself. I wasn’t thankful. I didn’t realize what life was until she was born,’ her mom said
Adalia’s success on YouTube has had its perks. Videos of her dancing to PSY’s Gangnam Style and Vanilla Icewere an instant hit when they went viral in 2015
‘People always ask me who my favorite celebrity is to dress, and I always struggle thinking of a name,’ he said on Instagram.
The condition became known as Benjamin Button disease after it was featured in the short story and Brad Pitt-led movie (pictured), The Curious Case of Benjamin Button, which charted the life of a man living with progeria
‘For me, the most rewarding part of it all is how my dress makes them FEEL. When someone wears Michael Costello, I want them to feel beautiful, confident, and absolutely fearless!
‘Thank you so much Adalia for giving me the chance to dress you!’ he added.
The two had first met in Texas during a meet and greet.
‘When I first met you, your bright smile and warm heart brought so much joy,’ he told her. ‘You’ve inspired me to create and reminded me of the reason why I got started in the first place. Thank you for just being you wishing you a very happy birthday.’
‘I’m having a moment,’ Adalia said as she unwrapped the dresses.
‘They are so perfect and I even want to wear them while I’m just at home!’ Adalia wrote in her own Instagram caption. ‘Michael Costello you did such an amazing job making everything I wish you can make all my clothes! I love you so so so much and I send you a million hugs.’
In December of 2019, Jennifer Lopez’s designer Michael Costello gifted the YouTube star two dream dresses for her 13th birthday
The stylist presented the hand-made dresses to the teen at her home in Austin, Texas
‘You’ve inspired me to create and reminded me of the reason why I got started in the first place. Thank you for just being you wishing you a very happy birthday,’ he also said
Speaking to People, the designer added: ‘It was the cutest. She was so adorable and so sweet.’
‘She’s so tiny that you instantly think she’s going to be like a baby, and you want to baby her. But I didn’t realize that she’s 13 years old, and she’s like any other savvy 13 year old. She was a little sassy!
‘She said she loves J.Lo, and anything that J. Lo wears she likes to wear, and she loves flowy fabrics and sparkles,’ he said.
‘And I said, ‘Okay, you’re my ideal client. You are the Michael Costello girl.’
‘Knowing that we have the capability to make something for them and to celebrate them and to make them feel good about themselves… I just wanted to make her birthday dreams come true,’ he added.
‘I feel like I’ve dressed everyone. It’s an incredible milestone for my career. I feel like I’ve done so much and I’ve been blessed so much, and now what I really want to do is start meeting more people like Adalia… What’s it to me? A couple of days on the sewing machine? A few hundred dollars’ worth of fabric and time, just to make someone else’s dream come true.’
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